After spending less than 24 hours on my local psychiatric unit, an ambulance brought me home. I had tried not to cry after they told me that they were discharging me, even though I didn’t know if I was getting a death sentence or not. I wasn’t sure whether or not I was going to be able to stop myself from committing suicide once I got home or not. The pull was so strong at times when the flashbacks got bad.
In the last few days, I’d been through hell. I’d been sexually molested by John Halipern, a fellow resident at Side By Side, the assisted living I resided in. Then I wasn’t allowed to process my trauma at all thanks to Eve (the owner of Side By Side) and Chrissy (the Nurse Manager of Side By Side) who had forbidden me from discussing it with anyone.
We’d had a meeting in Eve’s office where I was pretty much blamed for the whole thing and I’d been forced to apologize to John while he sat there with his arms folded across his chest, his chair tilted back, and legs kicked up in the air. After the meeting when I returned to my apartment, I had been so upset that I almost ended my life, but a message from Jeff, my best friend that I also had a huge crush on, pulled me back from the brink of suicide and instead I called crisis who directed me to the ER from which I was admitted to the local psych unit.
After being there from 5 AM until 3 PM they decided I was too medically fragile to be treated on their unit as I had a G tube to drainage, a J tube that I got fed tube feed through 22 hours a day, and that all my medication got pushed through, a port-a-cath that I got IV fluids with potassium, dextrose, and saline through 24/7, oxygen that I wore overnight or whenever my O2 level dropped below 92%, used straight catheters multiple times a day to drain my paralyzed bladder, and was wheelchair-bound.
I tried to pull myself together in the ambulance ride home by taking four-count breaths but once I got home and the paramedics put me in bed and Lesley took over taking the IV bags and tube feeding and putting them on my own pumps and my own IV pole and the paramedics left my apartment, I burst into hysterical tears. Lesley didn’t have to say anything. She just sat there and rubbed my back as I cried.
“I wish I could stay with you tonight,” she told me, “but my husband would throw a fit”.
“It’s ok,” I told her. I couldn’t expect her to do that. I did wish my mom would come up and stay with me, or at least invite me home for a few nights to help me heal from this trauma, but I knew she would never do that, it was all just wishful thinking.
The next few nights I cried myself to sleep and had to physically speak aloud to myself mantras like, “I will not kill myself, there is so much more to my life that hasn’t happened yet that I need to experience.” “I don’t want to hurt mom or dad”. “I don’t want to hurt Jeff. I have so much more time I want to spend with Jeff.” “I have so many more stories I want to hear from Bubbie Goldie (my maternal grandmother). I have so many more shopping trips I want to go on with Bubbie Beverly (my paternal grandmother). I have so many more jokes and laughs I want to hear from Grandpa (my paternal grandfather). I have so many other family members that actually do care they just don’t understand. I don’t want to hurt them.” “I have so much more writing to publish and share,” “I have so many more books and blogs to read,” “I have so much more wisdom to share,”.
I spoke more with Lesley, my therapist, and my mom about my feelings around what happened with John and somehow was able to process it a little more to the point where I no longer felt so suicidal and depressed. The flashbacks slowed down and life continued to move forward.
I met with my new primary care provider, Karen. She was a nurse practitioner working under Dr. Hammet. She said I could mostly deal with her though if I preferred to see a woman.
“I have a history of being sexually abused by men,” I explained, leaving out mention of my most recent experience or the specifics of what happened with Mr. R. I was relieved when she didn’t press for more info.
“Well, you can see me then,” she agreed smiling.
At first, I really liked Karen. She signed all of the paperwork I needed to get the ball rolling for me to get the PCA services and she issued me a handicapped placard for any vehicle I might want to be a passenger in.
“I don’t want you ever driving though,” she warned me. “Not with your seizures and the way you blackout with your heart arrhythmias and low blood pressure, so I’m going to click off on this handicapped placard that you can never get a license.”
That part I didn’t like because it seemed so final, but when I thought about it, I knew Mass General Hospital had said that I would never be able to walk again, and I knew my life span was limited so it wasn’t the worst thing in the world that she had done, but this was my first taste of her doing something that stressed me out a little.
“I’d like to see you once a month to follow you,” she said to me.
“That sounds good,” I agreed. That’s what my primary doctor in Springfield had done.
“Any questions you can call the office and come in sooner,” she assured me.
I smiled, nodded, and thanked her.
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After being at Side by Side for two weeks I got a call from Adlib. They told me that I could have a meeting with someone named Rhonda because they were just about ready to start setting up services for me. I was excited because it would mean I would have more help and things would be easier, but I was also nervous because it was the unknown, and I didn’t know if Lesley would stay on once I got PCA services. I didn’t know if she would be interested in being my PCA. I knew my parents were paying her $16.50 an hour at her request because that was how much she made at the hospital and that the PCA pay rate at that time was only a little less than $15 an hour.
Rhonda eventually made contact with me and we met together in the main building of Side by Side in the kitchen at one of the tables. Terry the cook kept pausing in stirring her pot of soup to listen to our conversation. She was interested in everyone’s lives even though her job was making meals for the residents and nothing more I didn’t like the way she treated the dementia patients, constantly ordering them to sit down at the table and not go anywhere. When they tried to get up she would tell the aides to give them PRNs of heavy-duty sedative medications because they were agitated. They weren’t agitated, they just didn’t want to sit around in a chair at a table doing nothing all day.
Sometimes Terry would do things like saying to them “Go to your room Cindy is going to change you” Cindy might not even be working when she said this, she would just say this to get them to leave the kitchen if she wanted them out of her hair. I thought all of this was very very wrong but obviously couldn’t point any of it out because then I’d get kicked out of Side by Side. Plus Terry was always nice to me.
“What will happen,” Rhonda was explaining to me, as Terry paused with her pan half washed in mid-air as she listened in on our conversation, “is a nurse and occupational therapist will come to see you tomorrow and ask you a whole bunch of questions and then it will take a couple of weeks for them to process your evaluation with MassHealth. In about two weeks or so I will come back out to you to go over the evaluation and let you know how many hours MassHealth has awarded you and then we will go over the process of hiring and firing PCAs (Personal Care Attendants) and filling out timesheets for the PCAs and sick time and overtime and all of that, I will show you how to find a PCA to suit your needs. Then it’s up to you to hire that PCA and have them fill out that New Hire packet and start working for you. You will be in charge of training them and if you need help your VNA nurse can help you train them as well or I can step in and help you train them too.”
“I have a private duty aide right now, I don’t know if she’ll stay on as a PCA or not,” I said, “but even if she didn’t, I’m sure she’d train the new PCA.”
Rhonda liked that idea and I passed Lesley’s information on to her after getting permission.
The following day the nurse and OT showed up right before I headed over to the main building, so I decided that that day I’d stay home so I could let Lesley leave for the morning, meet with the people from Adlib and then work on school and personal writing projects from home.
The nurse and OT went through every single part of my day from the moment I woke up asking me what I do and don’t need people’s help with, and if I do need help with it, how long it takes to do the activity. For example, I told them when I first woke up Lesley had to shut my feeding tube pump off and flush my J tube with 60 ml of water and that took about 5 minutes. Then she had to crush up my thyroid pill, which took about 5 minutes. Then she had to mix my crushed thyroid pill powder with 5 ml of water and push the mixture through the J port on my feeding tube and then flush with another 60 ml of water. That took about 10 minutes. Then she had to disconnect the old bag from the pump, throw it out get out five new boxes of Peptamen Prebio, get a new feeding tube bag, pour the five new boxes of Peptament Prebio into the new feeding tube bag, prime the bag and set the pump to 30 ml/hour to get it all ready to go so that after I got my J tube meds we could hook it up to me for the day. That took about 20 minutes.
We went over this for the entire day and night. Once we finished going over all of that, they wanted to see how I transferred with my walker, so I demonstrated how I used my walker to transfer, but I almost fell. I was rapidly losing strength.
Before they left they each gave me their cards and told me that it would be about two weeks just like Rhonda had said and that Rhonda would follow up with me at that point.
For the remainder of the two weeks, Lesley and I went about our morning and evening routines and I spent my days getting dropped off at the main building and then hanging out with Jeff either at the main building or his apartment.
There is no doubt about it, we had become best friends. People had started referring to us as a couple but we laughed it off and said we’re more like brother and sister or because of the major age difference even uncle and niece, but we definitely loved spending time together. Every once in a while when Lesley told me we’re going home to take a shower Jeff jokingly would say, ‘hey can I come along and jump in with you?’ But back then I always thought he was joking.